Well, after a lot of phone calls, an assessment on S, the care home have agreed that they will accept him!!!

Not sure that I am happy, still very hurt and upset by the managers comments, but I DO need respite now! it is only for a week. The place is lovely, views right across the Bristol Channel, can even see the sea from his room! CHC are going to give me addresses of other homes, but at the moment, I know I haven't the energy or strength to go looking. So have agreed a date in just over a weeks time. If it doesn't work out, I will look at another place, for next time. The main thing at present, is to get S into a reasonable place, so I can take a breather! If I leave it any longer, there will not be a choice. I know that, I think S does as well. Not that he is saying much, except the thumbs up in agreement!

I am so cross with myself, for letting this happen. I have tried to be as positive as possible, but perhaps too positive! Thinking I had everything under control. That's the biggest laugh of all, PSP does not allow for any of that nonsense!

Please, please, all of you, look in the mirror and ask that question, that none of us want to ask. "AM I OK?" If it says yes, throw a brick into it a buy a new one! We all need a break at some stage. Although I don't feel like this, I know it's not a failure on my part, I'm just so, so exhausted.

Lots of love

Heady

42 Replies

Heady, I am in exactly the same place as you, I have searched for respite care in our area, they have long waiting lists.... I am struggling , so despatate for just a few days on my own. as much as we love each other we both need a break away....but only way is for carers to come into our home and I have to go out, I just want to stay at home and not be a carer, I just for a day even......xx

It's so tiring isn't it? Carers coming in is great, but what do, you do? Rush around, trying to catch up on life, even if it just a pleasure trip, it's the constant watching the clock, making sure you are not late back, takes any enjoyment or relaxation out of the time off!

Well done Heady. You really deserve a respite. Detach yourself emotionally. They are just doing their job as they see it. You need to look after YOU. No-one is getting at you personally. I am realising I need to , pleasantly if possible, get the best deal I can for Chris. Money is cut and I fear the quiet ones will be going under. Its not a world I like but its the one we are in.

Enjoy what you can get. I had an afternoon off with a friend- lunch and at the cinema -and it was wonderful to walk quickly, talk and eat without being a carer.

I think that the only way you can do what I am, is to detach yourself from the situation. At the moment, I feel as if I am looking down on someone else's life. Ain't pretty, how can anybody cope, looking after a PSP sufferer, without help or a break? Even with all that, it still feels impossible!

Oh Heady I am so happy you have succeeded well done You are one hard worker fighting for S and being a super carer to him. I hope you enjoy that 1 week of respite but please do take some time out to rest and recharge your batteries!

Heady so glad you got S into the nursing home for a week, you enjoy your week off, hope you are going somewhere warm? You deserve it, you are always there with kind words, and a lot of wisdom, now you take some of the good advice you give, and use in on yourself. I wish there was a way to get all of us tired careers on a plane, and take you all away to somewhere warm, and let you all chill out, and sleep and not worry about anybody. Sending you all a big hug.✈️✈️✈️✈️💐💐💐💐 xxxx

So glad to see you got it sorted. Last night I went out in the evening for first time in a year and I was actually giddy as daughter drove us to fund-raising quiz for local animal rescue. She is going to Istanbul on Thursday for five days so I will be alone here for first time ever. Paid bill for funeral yesterday, all of £100, and I can get grave walled and headstone in place in three months so then I can start planting. I still sleep 9+ hours per night but can feel myself getting a tiny bit stronger each day. When a 'Chris would have loved this' moment strikes and the tears well up, I just think about all he went through and am honestly glad it is all over for both of us.

Hi Pattz, glad to hear you are starting to get a bit stronger. It will take time. I read on one of your posts, you are trying to wean yourself off the site. Don't blame you, I think I will want to get as far away as possible from this dreadful disease! Just like to say, before you go. Thank you SO SO much, for being part of our lives and helping me and others along this terrible road we all travel. I know we all support each other, I really don't know how I would have managed to get this far without that support. I wish you the best, in your quest to carve out a new life for yourself. Chris will be on your shoulder, for as long as you want him there. As we all say to new members, life isn't over, it's just changed, you will get use to have a new "normal"!!!!

Hi Heady, I am still here. I work as a translator and when I get stuck I have for years been in the habit of checking my email box, then FB before returning to the text I am working on. Since I joined this forum it too became part of my displacement actIvity and until I erase the link shall continue to be so. And I can hear you thinking "How on earth did she work at home while caring for C?" This time last year he was still walking, just, and I actually did not do any translation just proof read/edit for Turks who write in English which I managed by getting three hours in early in the morning before I helped C up, then another couple of hours after he was in bed at night. we needed the money with all the extra costs associated with his PSP. Last April when he started day care two days per week I could also work on those days. Now I a, trying to get my brain really going again and am back to academic translation. I have not yet recovered the level of concentration I had before his PSP but am getting there and love the work. So it seems as long as I work I may well continue to post here.

Enjoy your break. My Christmas gift holiday was absolutely fantastic and ironically not really necessary as he died so soon after I took the break. He was happy that I went and I know he was very ready to leave us.

Heady well done first respite always the worst to get used to but as you or Nanna told me last year, we need time out so we can care more. Hope the nursing home is good sounds well sited. Try and get some sleep and a few glasses of red wine over the week. If you visit S you may have to be hard as he will (well M does) try to get you to take him home, don't unless he has been in a few days and you are not happy with the care. You are not superwoman you need your time out to recharge the batteries, give it a week and you will be better. Then book the next respite for a month time. Do not forget to inform DWP that he is in respite for a week your Carers Allowance and his attendance Allowance will not be affected unless in for over 28 days in 2 months.

I'm sure it will be hard, but yes, I will be strong. I will have something booked for the last few days, so it will be hard to bring him home, unless I really have to! The next time will be booked as soon as possible, so I can arrange a proper holiday.

Hi Heady DWP is department of work and pensions and it looks after, Attendance Allowance, DLA/PIP, and Carers Allowance as well as State Pension (state pension not affected by respite or care home stays so forget it). You should be getting these hopefully if not contact local CAB for assistance in claiming. Good idea about booking holiday I think we al could do with some sun or theatre.

Anyway I am shattered today M had a bad night (therefore so did I) took her out in car to do some chores and to take her to her mum's care home. Must have lost attention and got too close to a van and so lost my wing mirror very shaken luckily only a mile to get home. Still shaking at what could have happened. M does not seem to be aware of what happened or if she is is not making a fuss. I need to sort out a bit more respite before I do something worse.

Oh Tim! Glad you both are OK. I often get beeped at, when I think I am driving alright, get "quite" annoyed! But I suppose I have done something stupid, while not concentrating properly! That why we need these breaks, it's not only for us and our loved ones, but for the wider world as well!!! The moral is, don't drive after a bad night! Gosh, the roads would be wonderful, if everyone took that advice!!!!

U doing the right thing us carers have to keep our own identities and touch base with friends if not will go crazy . as long as care is given by someone u feel is good enough u have to step back and let it happen - try to plan so u get regular breaks in respite then on the bad days u can think only ? More days to a good night sleep etc. Take care xxx

Enjoy your time without the burden of constantly being 'on duty' When you think that if anyone is admitted into hospital through sudden illness that have to be cared for by the staff and nobody feels guilty about that so do why should you feel guilty about leaving S in the care of of others whilst you take a desperately needed break. The reality is that we can't stop ourselves feeling guilty but a regular break will prevent 'burn out' Have you any idea what you will do with this precious time? Kate xx

Exactly! Well said. Heady-you go girl! Sleep, drink, shop, and chat nonstop about anything other than PSP to anyone that will listen Enjoy your well earned break. No worries, no guilt, just enjoy your recharge time otherwise what is the point of it right? Much love, JG

Heady I actually think most nursing homes can never meet the needs of a person with PSP my mother was in a very good home but I still was not happy to leave her for long periods alone . However dad and I got a system going I would go in in the morning until 13.30 and then dad would come at 2pm until 6 pm it seemed to work quite well as I could attend to all the little things the carers had no time to do . Mum had a lovely room and we made it lovely and homely x in the end I think it was nicer for mum being in the home as was so much more interesting for her than just being stuck at home with dad x lots of people coming and going and so much better for dad as he could spend quality time with her without being exhausted . We looked after her at home for 5 years and it was just the last two years in the home before she died x the choice is never easy we just do the best we can x take care x Louise x

You do need respite very important this terrible illness just leaves you drained when you are looking after someone with it. My husband passed away 7 years with this and I was done in by the end of it so know what you are going through.xxx

Heady, you have done the right thing - for both of you ! As you know, I`ve been there, done that, so I completely understand everything it entails. Putting someone you have loved and lived with for half a century into a nursing home, even for a week, is not easy.

P is now in care full time but I know it was unavoidable so the `practice` we had with respite helped a little.

Gosh, you do need a break. How can I impress that upon you? PSP has taken over our father, and in the last year he went from independent living, to assisted living and now with his last fall.... where he broke his neck and pelvis, to nursing care. This past Thursday he went to hospice. It can move fast, and wow it is pretty exhausting if you are the caregiver, and in the family. You feel so helpless. Someone told my sister that PSP is the Ferrari of neurological diseases.

Take care of yourself. Maybe that is what PSP is to teach us.... be kind to yourself.

I like that " the Ferrari of neurological diseases"!!!! Never did understand the "car thing". As long as it got me to the supermarket, who cared! Certainly this has to be the worst going. Nobody understands the complex issues that come with this illness, but then, who knows what goes on under the bonnet of a Ferrari and I suppose if you own one, you don't care, as long as it gets to wherever! All I know is this is ################################################!

well HEADY m\ate I don't want to particuly look in the mirror what about the laughter lines mate I hope you have a well deserved rest now its a bit sunny in Australia at the moment matey its a 34 degrees but the humidity is very high it makes you feeel like a bag of old laundry that you have been waiting to do formonths sought of biut the sunshine is great although I thonk its a bit far for a week maybe the isle of wight might be a good shot for you or nip over to PARIS for a great week end a few glasses of wine and a good kip you will be doing thre CAN CAN in no time at all mate then rrturn home all refreshed and lively until the next time please excused any mistakes this computer is new and it has a mind of its own I knopw about the sprelling mistakes but cannot cross them out yet using the cursor matey anyway wherever you go whatever hyou do make sure its a great TIME peter jones qureensland Australia psp customer

Heady, I just love you! Your posts are always "right on". I've been doing a lot of looking in that mirror too, but at Kim's stage, I'd be afraid to leave her for just a few hours. People will sometimes ask if I'm OK or if I need anything. I always tell them that I'm doing alright and thanks for asking. I guess that's the "man" in me, or the "stupid man" in me.

No Ketchupman! It's not the "man" in you. It's the part of all of us, that people refer as the "Angel"! How on earth could we do, what we do, if we gave the right answer!!! By saying "yes, I am fine". It's ourselves we are trying to convince. Which is OK, it gets us through the day, but every so often, we need to admit the truth, get off the roundabout and breath, sleep or whatever!

I know you can't leave Kim, but there are other things that people CAN do to help. The shopping, washing, ironing, cleaning, the garden, taking the dog for a walk. Shove food into you, share a glass of wine, just be there, someone to chat to, shoulder to cry on. Need I go on??????

My husband has recently been diagnosed with PSP and already I know that I need breaks and the time apart does us both good. I was a nurse and managed a sheltered scheme so I am now having to give myself the advise I always gave others. Owning up to needing your own time will help us keep our own strength up and our sanity.

10 months agoHidden

Oh Yes you are so right. I am new to this site. I have been taking care of my mother for 4 years....2016 is year 5. She is in the last stages of her illness.....I fear what will happen to me when this is over......I have never taken a break.....I know that I have done damage to myself in every way.........I just want it to be quick.....I dont want my mother to suffer. Am I okay? Not really.